Website for ESRC research project 'Big Society? Disabled People with Learning Disabilities and Civil Society'

Monthly Archives: October 2013

Understanding personhood and disability: beginning a dialogue with moral philosophy.

Katherine Runswick-Cole, Manchester Metropolitan University

Dan Goodley, The University of Sheffield

A paper presented at The Interdisciplinary Dialogues Seminar Series, The School of Education, The University of Sheffield, Sheffield, UK, on 16th October, 2013

This discussion paper emerges from a wider research project, funded by the ESRC, called Big Society? Disabled people with learning disabilities and Civil Society. The project asks broadly ‘how are disabled people with learning disabilities faring in Big Society?’. This paper is an attempt to begin to bring together some contemporary examples of policy and practice in dialogue with debates within moral philosophy focused on the lives of people with learning disabilities. Kittay and Carlson (2010:6) have described what they term ‘cognitive disability’ as ‘philosophy’s nightmare’, because of the challenges it brings to conceptions of justice premised on capacity, independence and autonomy, and so, as researchers located within disability studies, we are attempting to dialogue with philosophy and, perhaps, nightmares!

Current policy context: Personalisation

The language of the ‘person’ dominates current policy and practice for people with learning disabilities in the UK. The term ‘personalisation’ has gained currency in the field of adult social care since the publication of Valuing People (DoH, 2001). Although personalization of care and support can manifest itself in many different ways, personalization generally means that the person, thought of as an individual with strengths, preferences and aspirations, is put at the centre of the process of identifying their needs and making choices about how, where and when they are supported to live their lives. (Carr, 2013:3) Despite evidence to the contrary (think Winterbourne View and the Solar Centre, Doncaster[1]) the personalization agenda is intended to have equal resonance in care homes and community settings (Carr, 2013)

Person centred approaches

Person-centred approaches are seen as central to the personalization agenda. Person centred approaches originated in the USA more than thirty years ago as an approach for organizing services for people with ‘intellectual disabilities’ (Mansell and Beadle-Brown, 2004). Since 2001 they have formed a central strand of the White Paper Valuing People (Mansell and Beadle Brown, 2004). The essential feature of person centred planning is the focus on the capacities, rather than the deficits, of the individual at the heart of the plan. Professionals are required to attend to what matters to the service user rather than impose their own goals upon them. The role of the individual’s family and social networks is seen as crucial to person centred approaches (Mansell and Beadle-Brown, 2004). Person centred planning requires a conscious commitment by all those involved to share power and to shift the locus of control towards the person at the centre of the plan (Sanderson, 2000). This means that the person chooses: who is involved in the process; timings and surroundings of the meetings; family members and friends are partners in planning; the plan reflects what is important to the person, their capacities and what support they require (Sanderson, 2000). Crucially, a plan should not just be about the availability of service provision and should include what is possible as well as what might be currently available for the person (Sanderson, 2000).

Issues of choice and control in services are considered to be central to person centred approaches (Carr, 2013). However, independent living “does not mean living on your own or doing things alone”, but rather it means “having choice and control over the assistance and/or equipment needed to go about your daily life; having equal access to housing, transport and mobility, health, employment and education and training opportunities’ (Office for Disability Issues, 2008:11 cited in Carr, 2013: 5).

Person centred planning – recognizing personhood?

Person centred plans stress the need to put the ‘person’ at the heart of the action. The person’s wishes, dreams, hopes and fears are prioritized: the ‘focus person’ matters. Person centred plans are an act of recognition, people with learning disabilities are “persons” with a right to have ‘choices’ and to ‘be in control’ and this policy mantra has dominated care services and practices in England since 2001. In many ways, of course, this approach is to be welcomed, people whose voices and wishes have been marginalized in the past should now be put at the centre. We know that sometimes (often?) the system fails but the principle of putting the person at the centre remains. That said, there is something that makes us feel uneasy about the ‘person centred plans’ for people with learning disabilities…

Non-disabled people (for the most part) are not the subjects of personalization; they do not have person centred plans, and this difference is, in part, from where our sense of unease originates. The naming of ‘the person’ in person centred plans is an attempt to recognize people with learning disabilities as ‘full human beings’, and yet, it is through this act of recognition that there is a simultaneously re-articulation of the view that people with LD have not, and might not, be seen as persons. Paradoxically, the act of naming the individual with learning disabilities as ‘a person’ has the potential both to make and unmake their personhood.

The question of personhood matters, it is crucial, because our sense of who and who is not a person will determine who can enjoy rights and protections, as well as the responsibilities, that personhood brings (Taylor, 2013). The words ‘person’ and ‘human’ are often used interchangeably but an individual’s de facto status as human does not necessarily mean that they can claim the status of person with the entitlements and protections that the status of “person” confers (Taylor, 2013). Kittay (2011) describes how in theorizing of social justice those with ‘severe cognitive impairments’ have often been consigned to the category of ‘human nonpersons’ for whom it is impossible to argue for social justice because theories of social justice couple dignity ‘with the capacity for autonomy’ (which is often contested or denied in the lives of disabled people with learning disabilities).

In the Rawlsian view, theories of social justice are premised on the free association of equal citizens in which the inequalities of race, class, gender and dis/ability are ignored; rationality is presented as the marker of moral personhood (Taylor, 2013). When Rawls (1980: 546) asserts that the problem of social justice is one for “those who are fully and active and morally conscientious participants in society, and directly or indirectly associate together through a complete life”, as Berube (2010) says, he relegates the lives of disabled people with learning disabilities to the margins. The Rawlsian view has been widely contested, by Kittay, Nussbaum and Wong among others, and it is clearly important to continue to debate personhood in this way. (See Kittay and Carlson, 2010).

But, crucially, Taylor (2013:8) suggests that such debates are, themselves, potentially problematic: “these inquiries [philosophical debates] themselves function to maintain certain ideas about ability and disability” and that “even the arguments that advocate a reconsideration of philosophical presumptions, uphold, rather than dismiss, a sense of stable qualifying conditions of personhood and humanity.” (Taylor, 2013: 8). In the lives of people with learning disabilities, norms of intelligence, competency and dependency are used not only to determine who and who is not considered to have a learning disability, but who and who is not considered to be a person (Taylor, 2013). This theorizing in reference to the norm is what Butler calls an “act of normative violence” that serves to limit and to police ‘the parameters of personhoood’ (Butler, 2004: 56).

Taylor (2013:4) accepts that it may be politically and pragmatically necessary to appeal to ‘a pre-discursive or a naturalized version of the human’ in order to advocate for people with learning disabilities. Person centred approaches are, perhaps, an example of such political pragmatism, but she also wishes to respond to the acts of normative violence that limit possibilities for personhood. And so, Taylor’s (2013) urges us to transform our understanding of the human by appealing to our shared vulnerability. For Taylor (2013: 11) “vulnerability is not (only) a lived condition, but a condition of living” and so personhood ‘rests not on qualifying conditions thresholds of ability, but rather on the responsibility that we have to each other as normatively vulnerable beings. (Taylor, 2013: 15).

Conclusion

And so as we begin to work with organizations of and for disabled people who are working in the context of personalization and person centred planning in their day-to-day practice, we ask:

How do the debates about personhood operate in the lives of disabled people?

What kinds of persons made and unmade within policy and practice?

What impact does this have on the day-to-day lives of people with learning disabilities?

Is it possible to claim (normative) personhood in the lives of disabled people with learning disabilities while simultaneously acknowledging vulnerability as a condition of living?

Challenging times ahead! But to paraphrase Nick Ross ‘don’t have philosophical nightmares and do sleep well!”

Driving to a meeting this morning, listening to Radio 4, the first item on the 8.30 news bulletin was that the Care Quality Commission is considering putting hidden cameras into care homes for older people and disabled people (http://www.bbc.co.uk/news/uk-24523895).

Yet again the focus is on a few violent, callous individuals, a few evil souls, we will catch them on camera carrying out the abuse and, then, and only then, we will deal with them. Problem solved. How can this be the solution? The abuse will still happen, people’s lives will still be shattered, and the systemic, structural and wider cultural causes of abuse will remain unreported and unchallenged.

This, to us, is a shocking example of what we see as institutionlised violence of disablism – state tolerance of the abuse of disabled people.

And as I drove back from the meeting and listened to the one o’clock news, things had moved on, the item was not the first on the list in the bulletin, in fact it didn’t feature on the news programme at all…

The article recounts how Susan Murphy and James Hinds abused people with learning disabilities for two years between 2005 and 2007 at the Solar Centre in Doncaster. Yet another distressing account of de-humanizing behaviour by “care staff” that “got away with it”. A story of delays in prosecution, the difficulties of proceeding with a case when the witnesses are ‘vulnerable’ and a refusal to carry out a serious case review.

But the difference with this article was the tag line: “These aren’t isolated instances. It’s cultural, and it’s grown out of what’s happened in the care sector.” This isn’t the reporting that we normally see. Usually the focus is on individual abusers, their individual personal characteristics, in individual settings. Following the Winterbourne View trial, Wayne Rogers, one of those convicted, was described as having a “particularly cruel nature”, another, Graham Doyle, was “cruel and callous” and the culture of the home was described as being like ‘disease, cancer and fog’ (Daily Mail, 2012 http://www.dailymail.co.uk/news/article-2223514/Winterbourne-View-11-care-home-workers-sentenced-abuse-exposed-BBC-Panorama.html).

In our 2011 paper about violence in the lives of disabled children (http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01302.x/full), we came to the conclusion that:
“violence experienced by disabled children and their families says more about the dominant culture of disablism than it does the acts of a few seemingly irrational, unreasonable, mean, violent individuals.” This is important because if we continue to blame “a few violent individuals”, we don’t need to think about the systemic and cultural change that is needed to prevent abuse. Identifying the callous characters of a few ‘bad’ people stands in the way of thinking carefully about the care practices and policies that meant that anyone ever thought it was acceptable to warehouse people with learning disabilties on an industrial estate like Winterbourne View. And most importantly, focusing on “a few violent individuals” will do little to prevent another Winterbourne View or a Solar Centre and the tragic consequences this has for the lives of people with learning disabilities and their families.